“If you think you are too small to make a difference, try sleeping with a mosquito.”  – African Proverb

 

“- Mommy, what are you doing?

– I am applying to Headache on the Hill. Patients, caregivers, clinicians, researchers from all over our country travel to our capital to meet with the people who are involved in the process of making laws for our country. The goal is to make changes in some of the laws and in the way some of the money is distributed to improve the lives of people with migraine and other headache diseases.

– Can I go with you?”

This is how my two-year-and-a-half year-old daughter, Lila Gharedaghi, joined me in applying for Headache on the Hill 2024.

Headache on the Hill organizers and participants are all so supportive, caring, understanding, and welcoming that they make the experience of bringing a toddler to the Hill seamless. There is a true sense of community and family. No matter the symptoms and hurdles participants have to get through, they show up, push through, and support the cause in any way they can.

Everyone can participate in the way they can depending on the current state of their disease, comfort level, prior experience, age and development. Every participant brings great value to the team regardless of whether they had to step out for several meetings or could not make it to Washington DC in person due to the symptoms of their disease or other circumstances.

The Headache on the Hill event creates a safe space where everyone in the room understands how disabling headache diseases can be. Headache diseases do not discriminate, neither does the Alliance for Headache Disorders Advocacy (AHDA) team. The Headache on the Hill 2024 cohort was one of the largest and most diverse to date with 275 participants representing the 50 states. A quarter of participants were People of Color and 16% of participants were LGBTQIA+ identifying. There were numerous youth advocates. The diversity of participants help bring to lives the diversity of lived experiences with the disease and different presentations such as the childhood migraine variants.

Is 2.5 years old too young?

I personally think this is about interest and readiness, not about age. Lila was not new to the world of headache, neurology, and advocacy. She visited the headache clinic, knows the symptoms of migraine, knows part of the neurological exam, was present during some virtual headache visits (with the patients’ consents) when daycare was closed. I had no other options for childcare, so she attended scientific conferences with me, and participated in Miles for Migraine and AHDA events. Her dolls have migraine and need to go to the doctor. The first time she ever said the word “migraine” was by the sign explaining the legislative process at the playground at Bushnell Park in Hartford during Miles for Migraine.

Lila and I talked about Headache on the Hill for several days before finalizing her application. I did my best to answer her questions. She guided me through the process, giving me feedback such as “Mommy, you talk too much” if my explanations were too lengthy and complicated. Once she developed her understanding of Headache on the Hill and decided to go, I respected her choice.

I am so grateful the AHDA team accepted her application. It was important to her to support me and the work I do, to be present by my side, to gain a better understanding of the legislative advocacy process, and to collaborate with me on a project.

On the morning of Headache on the Hill, Lila decided to use her watercolors to create a painting for the Legislative Assistant for the Representative of our district to be able to better explain migraine. She drew a little boy who had to lay down and was closing his eyes because the sun was too bright for him. She described her drawing to the Legislative Assistant and explained the little boy had to go to the doctor to get treatment to feel better. 

It’s Important for Young People to Get Involved

Including the next generations in advocacy is crucial. Children are our future. Our efforts to try to make the world a better place should include children and their perspectives. It is important to teach that children they have a voice and that they can take actions to try to transform their ideas about a more equitable and better world into meaningful reality.

As the African Proverb says, “if you think you are too small to make a difference, try sleeping with a mosquito.” No one is too small to make a difference. Change is made in incremental steps, building relationships and staying focused on the goal in a persistent and resilient manner.

Experiencing legislative advocacy, absorbing the majesty of the Capitol, and feeling the power of teamwork are much more impactful than more abstract learning about advocacy through secondhand stories or books. I am so grateful to live in a country where legislative advocacy is possible, and children can participate. 

Creating Supportive Communities

In summary, the Headache on the Hill organizers and participants make the experience so special and create a safe space and very supportive community, which also enables children to participate. I personally think that any child who is interested in and feels ready for advocacy can participate as long as it is appropriate for their age, comfort level, development and to the setting of the event.

Everyone can contribute at their level, even if it is ‘just’ by being present for the cause. Showing up means a lot. There is no better way to learn about legislative advocacy than participating in it. It is important to involve the next generation who will later take on the advocacy bâton.  

Written by Olivia Begasse de Dhaem, MD, FAHS